If you have been diagnosed with mast cell activation syndrome (MCAS), please take a minute to fill out this anonymous survey. The Mastocytosis Society will use data from the survey in its presentations at a National Institutes of Health (NIH) workshop on MCAS in early September. This survey is only open until Saturday, August 25th at 10p.m. EDT / 7 p.m. PDT.
Some critical issues the survey hopes to assess are what percentage of people are living with a more severe form of MCAS than has been previously described in the literature, are severely food-restricted, and are experiencing difficulty accessing appropriate care.
All patients with a diagnosis of MCAS made by a physician are encouraged to take and submit the survey. In the situation where a patient may have been given more than one mast cell disease diagnosis, as long as one diagnosis is MCAS or hereditary alpha tryptasemia, they may still take this survey.
All patients affected by MCAS and/or hereditary alpha tryptasemia are encouraged to contribute to updated knowledge about their disease by taking this survey. This survey is open to children, teens and adults affected by MCAS, with parents either answering for young children or assisting teens with completing the survey.
If you will require help taking the survey, e.g., because of vision problems, etc., please let us know at [email protected]
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What is Mast Cell Activation Syndrome?
Mast cells, a type of blood cell, play an important role in the body’s immune system. They reside in all body tissues and form part of the body’s initial defence system. Mast cells react to foreign bodies and injury by releasing a variety of potent chemical mediators, such as histamine, when activated. In a healthy person these chemicals will act beneficially to protect and heal the body, but in a person with MCAS these same chemicals are inappropriately triggered and released and have a negative effect on the body. Amongst the triggers are a variety of different foods, exercise, chemicals, fragrances and stress. Many sufferers struggle to identify their triggers and continue to discover new triggers for many years after diagnosis.
Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation- heat and cold intolerance. It is surprising how difficult this symptom can be to manage until you experience it.